Division of General Pediatrics, Sainte-Justine University Hospital Center, Montreal, Québec, Canada; Department of Pediatrics, Faculty of Medicine, University of Montreal, Montreal, Québec, Canada.
Department of Pediatrics, Faculty of Medicine, University of Montreal, Montreal, Québec, Canada; Division of Neonatology, Sainte-Justine University Hospital Center, Montreal, Québec, Canada; Clinical Ethics Unit, Palliative Care Unit, Sainte-Justine University Hospital Center, Montreal, Québec, Canada; Research Center, Sainte-Justine University Hospital Center, Québec, Montreal, Canada; Clinical Ethics and Family Partnership Research Unit, Sainte-Justine University Hospital Center, Montreal, Québec, Canada; Clinical Ethics Office, University of Montreal, Montreal, Québec, Canada.
J Pediatr. 2018 Sep;200:58-63.e1. doi: 10.1016/j.jpeds.2018.03.006. Epub 2018 Apr 25.
To explore parental perspectives regarding their preterm child at 18 months corrected age and to investigate whether reported answers correlate with level of neurodevelopmental impairment (NDI) as defined by clinicians. We hypothesized that parents would report more negative concerns with increasing level of NDI.
This study included 190 infants born <29 weeks of gestational age in 2009-2012 at 1 tertiary university health center. Infants underwent detailed developmental assessment at 18 months corrected age, and were classified into either absence or presence of mild to moderate or severe NDI. Parents were asked 2 open-ended questions: "What concerns you most about your child?" and "Please describe the best things about your child." Open-ended questions were analyzed using qualitative methodology.
In this cohort, 49%, 43%, and 8% of participants had no, mild to moderate, and severe NDI. The majority of parents (72.8%) had both positive and negative aspects to report; 26.8% only had positive ones. The main positive themes invoked by parents included their child's personality (61%), happiness (40%), developmental outcome/progress (40%), and physical health (11%). The main themes regarding parental concerns included neurodevelopment (56%), notably language and behavior, and physical health (24%), particularly growth/nutrition and physical fragility. There was no association between positive themes and categories of NDI, but parents of children with mild to moderate NDI reported more concerns about development.
Neonatal outcome research would benefit from incorporating parental perspectives regarding their child, including negative and positive aspects, enabling physicians to provide complete and balanced information to parents of all preterm infants.
探讨父母对 18 个月校正年龄早产儿的看法，并调查报告的答案是否与临床定义的神经发育损伤（NDI）水平相关。我们假设，随着 NDI 水平的升高，父母会报告更多的负面问题。
这项研究纳入了 2009 年至 2012 年在一家三级大学健康中心出生的 190 名胎龄<29 周的婴儿。婴儿在 18 个月校正年龄时接受详细的发育评估，并分为无、轻度至中度或重度 NDI。父母被问到两个开放式问题：“您最担心孩子的什么？”和“请描述您孩子最好的方面。”使用定性方法分析开放式问题。
在这个队列中，49%、43%和 8%的参与者没有、轻度至中度和重度 NDI。大多数父母（72.8%）有积极和消极的方面要报告；26.8%的父母只有积极的方面。父母主要提到的积极主题包括孩子的个性（61%）、快乐（40%）、发育结果/进展（40%）和身体健康（11%）。关于父母担忧的主要主题包括神经发育（56%），特别是语言和行为，以及身体健康（24%），特别是生长/营养和身体脆弱。积极主题与 NDI 类别之间没有关联，但有轻度至中度 NDI 的孩子的父母报告了更多关于发育的担忧。
新生儿结局研究将受益于纳入父母对其孩子的看法，包括积极和消极的方面，使医生能够向所有早产儿的父母提供完整和平衡的信息。
